HDYO Hot-Seat with Filipa

HDYO has more information about HD available for young people, parents and professionals on our site:

www.hdyo.org

February 24, 2017

We decided to interview Filipa Julio, from Portugal, who is one of our most reliable translators and reviewers in Portuguese, and is herself very involved in the HD community despite no family connection.

Name: Filipa Júlio

Age: 40

1) What made you want to get involved with huntington disease, and how did you get started?

I have started to work as a research assistant in a HD study in 2007. In 2008 I attended a meeting of the Huntington’s Portuguese Association and I was invited to join the Board. Since then, I have been working as a volunteer for our national organization and also for international HD associations. Once you get in touch with this complex disease and become aware of all the consequences that it has, you are impelled to help and support everyone that is affected by it.

2) What is your connection to huntington disease?

I’ve been working with HD families since 2007, both at a professional level (I’m currently doing my PhD in Huntington’s disease) and at a more personal level (volunteering for several organizations that support HD affected persons).

3) Where did you grow up tell us something interesting about the place?

I grew up in Coimbra, an ancient university city in the center of Portugal. It was quite a good place to grow up, I think, as it allowed me to have the benefits of living in a city, with access to all the educational, health and cultural equipments, and of living in a small place, where I could play in the streets or build a tree house.

4) What is best way of you to celebrate your birthday?

Having a huge party surrounded by family and friends, just as I did some weeks ago when I turned 40!

5) Are there any place you wish to travel you never been?

All the fictional places that seem amazing in books and films, like Oz or Wonderland.

6) What do you doing when you’re not volunteering for hdyo?

Work in my PhD. Travel. Work in my PhD. Go to exhibitions. Work in my PhD. Go to concerts. Work in my PhD. Go to the cinema. Work in my PhD. Go out with friends. Work in my PhD. Go to the theater. Work in my PhD. Read. Work in my PhD. Volunteer for the Huntington Portuguese Association. Work in my PhD. Volunteer for HDBuzz. Work in my PhD. Volunteer for the European Huntington Association. Work in my PhD. Volunteer for the International Huntington Association. Work in my PhD (I think you got the idea…).

7) What season of the year do you like the most?

Summer, without any doubt. Always look on the bright side of life!

8) George huntington the lucky man had a disease named after him what would you have named after you, and why?

Some kind of weather phenomenon, like an aurora borealis or a rainbow. Something colorful, airy, and brief.

9) Apart from a cure, what would you change in Huntington, what would it be and why?

The prejudice that affects HD families; dealing with such a complex diagnosis seems to be difficult enough as it is, let alone having to deal with the misunderstanding of others.

10) Let’s pretend you’re the president of the entire world what would you do?

I would start all over again, go back to the big bang moment and try to have a brand new beginning in which words like liberty, equality, fraternity are not meaningless sounds but a reality.

11) If you were on a desert island what 3 wish would you have to get home?

There are no desert islands anymore. Hilton, Melia, Intercontinental and other Hotel groups turned them all into luxury resorts. Unfortunately.

12) What kind of music do you enjoy listen to?

Silence, the most special kind of music that you can hear in such a noisy world.

13) What message do you have to young people looking for a cure to Huntington disease?

Don’t just sit in your room waiting for a cure and feeling miserable. Get involved in every possible way in all the exciting things that are currently happening in the HD world (websites, research, help groups, lay organizations, and so on). Try to be an active part of the process. It will help you feel better and it will help others for sure!

This document was downloaded from the HDYO website at https://en.hdyo.org/pro/news/527

Advice received via the HDYO web site should not be relied upon for personal, medical, legal or financial decisions and you should consult an appropriate professional for specific advice tailored to your situation.